Beacon Broadside: A Project of Beacon Presstag:typepad.com,2003:weblog-14005452017-07-20T08:35:23-04:00Ideas, opinions, and personal essays from respected writers, thinkers, and activists. A project of Beacon Press, an independent publisher of progressive ideas since 1854.TypePadFaster, Higher, Stronger: My Son Jamie’s First Swimming Race at the Special Olympicstag:typepad.com,2003:post-6a00e54ed2b7aa883301bb09b0ae01970d2017-07-20T08:35:23-04:002018-10-17T08:55:27-04:00By Michael Bérubé | In disability studies, we tend to be skeptical of the so-called “supercrip” and allergic to any suggestion that people with disabilities can be inspiring. But it really is quite difficult to go to a Special Olympics meet, of whatever size, and not be inspired by the passion of the athletes and the dedication of the legions of volunteers. When you realize that only fifty years ago, almost no one believed that “the retarded” could participate in athletic events, you realize just how extraordinary Eunice Shriver’s vision was. And if you’re me, you thank her family—and all those volunteers.Beacon Broadside

Forty-nine years ago, about one thousand athletes with intellectual disabilities from the US and Canada competed in the first Special Olympics International Summer Games in Chicago. Today marks the anniversary of the games, founded by Eunice Kennedy Shriver.

The Special Olympics hold an important and cherished place in the hearts of disabilities studies scholar Michael Bérubé and his son Jamie, who took part as an athlete in the swimming races. In the following passage from his memoir Life as Jamie Knows It: An Exceptional Child Grows Up, written with Jamie’s participation, Bérubé recalls how competing in the games deepened his son’s sense of self-understanding during his adolescence. As a father, he, too, learned a new aspect of his son’s personality.

***

In 2009, Jamie entered serious solo competition for the first time: Special Olympics swimming meets at nearby universities. Now, when I say “serious competition” and “Special Olympics” in the same sentence, I am aware that there are people who might snicker or guffaw. Anyone inclined to snicker or guffaw should read Timothy Shriver’s account of the first Special Olympics, held in Chicago in 1968. Chicago in 1968 is usually remembered for something else, but this seems important too.

All over Soldier Field, children of scorn and lonely teenagers tried their best and won. People who had so little to give gave the one thing they had: their hearts. And those around them were given a chance to unleash their spirits, too, by cheering them on, by watching their bravery come to life, by meeting their smiles with eyes opened to loveliness. On that day, winning had nothing to do with beating anyone and everything to do with playing like no one is judging even though everyone is watching. Sports had never seen anything like it. No one had.

. . . On July 20, 1968, for the first time in history, people with intellectual disabilities were celebrated as great individuals by others who discovered their gifts in the joy of sports. Gifts! The idea of Olympic triumph, of winning, of bravery, of being gifted—none of these qualities had ever been conferred on these human beings. But on the first day, there was something in their persistence, something in their emotional tenderness, in the uninhibited openness to others that burst to life and awakened those who could see to a different way of defining what it means to win.

In disability studies, we tend to be skeptical of the so-called “supercrip” and allergic to any suggestion that people with disabilities can be inspiring. But it really is quite difficult to go to a Special Olympics meet, of whatever size, and not be inspired by the passion of the athletes and the dedication of the legions of volunteers. When you realize that only fifty years ago, almost no one believed that “the retarded” could participate in athletic events, you realize just how extraordinary Eunice Shriver’s vision was. And if you’re me, you thank her family—and all those volunteers.

So when I say that Jamie took part in serious competition, I am not saying that Jamie’s Special Olympics swimming career can stack up against the times posted by nondisabled swimmers his age, any more than I would claim that 14.82 seconds is an impressive time for a fifty-meter dash. Here’s what I’m saying.

In his first meet, in April 2009, at St. Francis University in central Pennsylvania, Jamie opened by winning gold medals in the 25m and 50m freestyle. Heats included only three or four swimmers, segregated by qualifying times; there were dozens of heats. This practice is called “divisioning,” and it is at the heart of Special Olympics, allowing athletes to compete at whatever level is appropriate to them. Then for his third event, the 25m backstroke, the meet officials combined his heat—consisting of three teenagers who had posted qualifying times of about forty or forty-five seconds—with that of two adult swimmers whose times were thirty-two or thirty-three seconds. Jamie’s best time in practice runs had been something like forty-three seconds.

I filmed the race like a dutiful dad; in fact, I bought a digital videocam expressly for that purpose. But I noted with alarm that at the halfway mark, Jamie trailed the field. I did manage to capture the beginning of his surge, but as he got closer to my end of the pool, my camera angle focused more exclusively on him, so I didn’t immediately realize that when he touched up, he did so in first place—for the third time that morning. He had overtaken the other four swimmers in only twelve or thirteen meters.

Not until later that night, after I had replayed the race a few times on my laptop, did I discover that Jamie had briefly looked around in the middle of the pool and found that he was trailing—whereupon he had reached down and found another gear, churning his arms and legs frantically to beat his fellow swimmers. He also beat his personal best time by just over ten seconds, which suggested to me that his “personal best” was a function of his relations to other swimmers—or, in more colloquial sports talk, he rose to the level of the competition. And it wasn’t simply a question of winning: in the statewide games two months later, the best he managed was a silver in the 50m freestyle—but that was all right with him, because he shaved another couple of seconds off his personal best in the event. Citius, altius, fortius. That’s what it’s all about. Well, that and living apart from his parents for two nights in a Penn State dormitory. Jamie thought that was pretty great, too. And he bonded with his roommate, a talented young man on the autism spectrum.

So by 2009, I learned that I had an eighteen-year-old with Down syndrome with a fierce competitive streak. At one point he even asked me how to spell “competitive.” Who knew this personality trait was in the cards? Even Jamie himself was unaware of it until he entered adolescence. It feeds his sense of self-esteem, it helps to keep him in shape, and it affords him some pride in his accomplishments. What’s not to like?

Each Cover Design a Collection of Small Storiestag:typepad.com,2003:post-6a00e54ed2b7aa883301b7c8d0246c970b2017-01-30T16:08:29-05:002017-01-30T16:16:52-05:00By Louis Roe
Life as Jamie Knows It is one of the first covers I designed for Beacon, and still one of the covers I’ve presented the most ideas for (only a handful are pictured here). Michael Bérubé provides his reflections on raising his son, Jamie, who has Down syndrome, as his son transitions into adulthood. Several important moments in their relationship take place at a public pool, which is why I was drawn to a blue palette. I also wanted to convey a sense of peeking into this young man’s life and identity; he isn’t summed up by any single part of him, least of all an irregularity in his chromosomes. One of my favorite elements of this cover is a sample of Jamie’s art in the bottom-right corner of the cork board.Beacon Broadside

Bookbuilder’s New England Book Show, an annual juried event celebrating book design and production, is just around the corner. Now seems an appropriate time to peek out from behind the curtain! I’ve been Beacon’s Assistant Designer for a little over a year, and in that time, Art Director Bob Kosturko and I have been working hard to create thoughtful, attractive packages for our 2016 and 2017 titles. Here are a few that I’ve particularly enjoyed working on.

Life as JamieKnows It is one of the first covers I designed for Beacon, and still one of the covers I’ve presented the most ideas for (only a handful are pictured here). Michael Bérubé’s memoir provides his reflections on raising his son, Jamie, who has Down syndrome, as his son transitions into adulthood. Several important moments in their relationship take place at a public pool, which is why I was drawn to a blue palette. I also wanted to convey a sense of peeking into this young man’s life and identity; he isn’t summed up by any single part of him, least of all an irregularity in his chromosomes. One of my favorite elements of this cover is a sample of Jamie’s art in the bottom-right corner of the cork board. He’s quite prolific in his artistic output, and you can find more of his work at Michael Bérubé's website.

This was my first attempt at using my own hand-painted illustration for a cover and, dramatically, the last cover I completed for the Fall 2016 list. I spend a lot of my time outside of work drawing and painting, so this felt very personal—considerably more nerve-wracking than being judged for someone else’s typeface and photos I’ve arranged on a page—which turned out to be just what the poetry collection called for. I’d never tried my hand at illuminated lettering before, and found myself obsessively churning out dozens of S’s before I felt confident enough to propose the one pictured here. It’s notably rougher around the edges than the illuminated letters you’d find in a medieval manuscript, but I think this speaks in its own way to the relationship between beautification and experience you’ll find in Range’s poems.

We handle a lot of sensitive, personal topics in the books we publish, but no book I’ve worked on has hit me closer to home than At the Broken Places. Co-written by a mother and son as a series of letters to each other, this book explores the challenges of coming out as a young transgender man, and of being a loving but very concerned parent to that man. While designing this cover, I was having similarly fraught conversations with my parents while making plans for top surgery this past fall. Some of the comps I developed focused on the grief of this experience; others, the effort of maintaining a dialogue. Ultimately, it seems appropriate to me—and accurate to the Collins’ story—that we went with something more celebratory: two family members giving each other room to experience their feelings freely and fully, in the interest of staying together.

These days, I’m working on covers for our Fall 2017 list, including books about animal personalities, public school funding, and Western conceptions of feminism, as well as another poetry collection. Each one becomes its own lesson in perspective, strategy, and materials. (Before working on text design for Lauren Shields’ The Beauty Suit, I had no idea how lipstick interacted with paper—so oily!) I’m also learning constantly about how to receive and interpret feedback. You never know what sort of comment or visual stimulus is going to influence the final outcome of a cover, which brings its share of excitement, challenges, and inspiration to the job. In this way, each cover is comprised of its own small stories, which are then poetically printed onto a medium weight paper, laminated, and wrapped around the most important story in the book.

Louis Roe has been an assistant designer at Beacon Press since 2015, after graduating from Emerson College’s Writing, Literature, and Publishing program and a brief stint in content marketing. Though he has momentarily been permitted to infiltrate this blog, he typically prefers to communicate in the medium of post-it note doodles.

Parent to Parent: Raising Children with Disabilities as They Come of Agetag:typepad.com,2003:post-6a00e54ed2b7aa883301bb09402783970d2016-10-07T16:00:07-04:002020-05-14T15:54:30-04:00A Q&A with Michael Bérubé
A capacious and supple sense of what it is to be human is better than a narrow and partial sense of what it is to be human, and the more participants we as a species can incorporate into the determination of what it means to be human, the greater the chances that we will enhance our collective capacities to recognize each other as humans entitled to human dignity.Beacon Broadside

The world first met Jamie Bérubé as the sweet boy in Life as We Know It: A Father, A Family, and an Exceptional Child, written by his father, disability studies scholar Michael Bérubé. Published in 1996, the book covers Jamie’s early years as a child with Down syndrome. Twenty years later, Michael Bérubé has followed up on his son’s progression through childhood, adolescence, and adulthood in Life as Jamie Knows It: An Exceptional Child Grows Up, as always, written with Jamie’s participation. No longer little, Jamie still loves the Beatles, pizza, creating art, and filling legal pads with lists as he did as a child. Now he’s navigating his academic experiences in school, his Special Olympics competitions, his evolving relationships with his family members, his encounters with illness, and the complexities of entering the workforce with a disability.

As the production manager for Life as Jamie Knows It, I was thrilled to have the opportunity to work with a writer whose experiences in parenting and in disability advocacy resonated so deeply. As the parent of a sweet, funny, music-loving, list-making (!) autistic son, Jamie and Michael’s stories touched, delighted, and inspired me. Given the opportunity to have a Q&A with Michael, parent to parent, I jumped at the chance to hear his take on some of the most pressing issues.

—Marcy Barnes

Marcy Barnes: It would surprise some readers to describe your model of consulting with Jamie on everything you’ve included in the book as “radical.” But I think it is! How do we, as parents, not get in the way of our children’s right to “nothing about us without us”? Especially those of us with children who don’t use typical methods of communication.

Michael Bérubé: I don’t think it’s radical; I think it’s democratic with a small d! I think it has everything to do with the conclusion of the final chapter, in which I suggest (or, perhaps, argue emphatically) that “a capacious and supple sense of what it is to be human is better than a narrow and partial sense of what it is to be human, and the more participants we as a species can incorporate into the determination of what it means to be human, the greater the chances that we will enhance our collective capacities to recognize each other as humans entitled to human dignity.” I think of it this way: as Jamie has grown and matured, as he has expanded his sense of the world, he has come to his own understanding of the way the world should be. And he has come to understand that he is the subject of these stories, and that with his increasing capacity to understand these stories he has gained the ability to comment on them—to ask that certain stories be told, to insist that other stories not be told, and to quibble with my choice of words in the story of how he decided to jump off a diving board. Granted, there are some aspects of the book that are almost wholly mine: Jamie knows about, but doesn’t participate in, my various quarrels with journalists and politicians and bioethicists. But he knows what it means to have someone (me, his mother, his brother, himself) tell his stories, and because these are stories about him, he should contribute—to the greatest extent possible—to how those stories are told.

As for how to represent children who don’t use typical methods of communication: after she read Life as We Know It, Clara Claiborne Park—author of two amazing books about her autistic daughter Jessy (The Siege and Exiting Nirvana)—wrote to me to say that she admired the book except for the part where I seemed to stumble into the trap of providing performance criteria for being human. In the final paragraphs of chapter five, I had written that “the ability to communicate lies in our software somewhere” and that “among our deepest, strongest impulses is the impulse to mutual cueing.” At the time, I imagined that I was being radically egalitarian, ending the chapter with what I thought was a rallying cry for everyone who loves or knows or works with a person with intellectual disabilities: “Communication is itself self-replicating. Sign unto others as you'd have them sign unto you. Pass it on.” Yes, well. I had not meant to establish any performance criteria for being human. On the one hand, Park convinced me that this could be an insidious argument for ranking our fellow humans by their capacity to communicate, or by the quality of their mutual-cueing software; on the other hand, Park reminded me—by sending me one of Jessy’s amazing works of art, a postcard version of her rendering of the Flatiron Building with two suns in the sky—that there is no reason to think of communication in terms of language. This is not a typical method of communication, I thought to myself. It is way more awesome.

Ralph Savarese’s work with his nonvocal but mind-expandingly imaginative son DJ works the same way. In his book, Reasonable People, the passages written by DJ will blow you away—as they were surely meant to do!

MB: Perhaps to parents of neurotypical children the many moments of tether-stretching you do with Jamie is unremarkable, but I am wholly impressed! How do you balance the fence between protection and over-protection?

Bérubé: We do no such thing! We boing back and forth on that fence almost on a daily basis, allowing Jamie to build confidence in his burgeoning independence one day, then fussing and fretting and keeping him well within our sights the next day. But the question reminds me of something I should have included in the chapter on Jamie’s relation to Nick. Nick has always pushed Jamie to do things on his own, sometimes when I have been reluctant or skeptical. Sometimes that involved little things, as when Nick went golfing with us and insisted that Jamie take care of his own clubs (I was perfectly willing to hand Jamie a club while I selected one of my own), and sometimes it involves quite daunting things, as when Nick suggested that Jamie fly solo to St. Louis (from Pittsburgh, on a direct flight) to visit him in college for a weekend. That was a lovely idea, but [my wife] Janet and I thought it was a bit too ambitious. But I can say in general that some of Jamie’s tether-stretching has been Nick’s doing, and I need to thank Nick for that.

MB: Can you discuss the term “functioning”—as in “high” or “low”? There are the obvious ways in which we limit our children with such loaded adjectives, but it still seems difficult to escape them when trying to get people outside of the family to understand our children’s needs. Is describing “functioning” merely a tool for parents and teachers to describe what they are experiencing in caretaking, rather than what the child is or will be capable of?

Bérubé: You are, I take it, referring to the passage in which I say I can’t abide the term “high-functioning” because of the way it evokes an intellectual-disability hierarchy. And certainly, “high-functioning” and “low-functioning” are improvements on “idiot,” “moron,” and “imbecile,” the classification system of a century ago. Here’s the long version of an answer.

Some years ago, I was playing hockey in the men’s league in State College. I scored a goal, and the goalie extended his right leg even though I was shooting over his left shoulder. In other words, he deliberately tripped me, and I went crashing into the boards. I injured my left shoulder as a result, and could not extend it behind my head or the plane of my torso for about six months. So I lost some significant range of motion, and I found to my dismay in the summer that I could not play softball; indeed, I could not even play catch. A deep-tissue massage gave me back about ninety-five percent of my...functioning.

So for a while, I fell below normal functioning (for me). Notice that I’m fine, in this context, with saying “normal” as well as “functional.” Now let’s remember that when Alfred Binet first devised the IQ test, he did so in order to find areas in which people with intellectual disabilities were having trouble, and he did this in order to help them. Here, too, there is a non-coercive idea of the “normal,” and of “functioning,” that is tailored to each individual. But then let’s remember how quickly this benevolent device was turned into an apparatus for ranking humans on a single scale of “intelligence” and reading some of them out of the human family altogether.

Autism presents an especially difficult challenge in this respect, because so-called “high-functioning” people on the Asperger’s end of the spectrum are actually capable of intellectual feats we putatively neurotypical people are not. So I try to use the terms “high-functioning” and “low-functioning,” just as I use the term “intelligence” itself, with great care—with tongs, protective Mylar suits, and an array of footnotes and caveats. Otherwise we’re right back to a disability hierarchy in which the “high” is more valuable than the “low.” I would rather describe people as specifically and as individually as possible: makes awesomely detailed lists and has great spatial memory but has trouble with the abstract concept of money. Writes fluidly and quickly, attends to fine details, but has limited range of motion in his left arm. Stuff like that.

MB: The concept of “inclusion” for persons with disabilities often seems to end when they age out of the system at twenty-two. What are your thoughts, in terms of both policy and social-supports, on extending inclusion into the post-school years?

Bérubé: I only gesture at this toward the end of chapter six, when I talk about inclusive employment for people with intellectual disabilities, but I would love to see a dramatic expansion in the social welfare state that would not only provide people with the job training and job coaches they need but would also provide employers with financial incentives to hire people with disabilities. I know that’s a tall order, but it’s what I would be talking about if I were running for President. Or running for anything.

And once more with feeling, my hearty thanks to Tony Sanfilippo and to everyone at Penn State Press for their faith in Jamie’s cataloguing and list-making and copy-and-pasting skills.

MB: How can the disability community and its allies harness the energy of other activists’ rights movements and vice versa?

Bérubé: If I knew the answer to that I would be an activist and organizer! Part of the problem, of course, is that “disability” names about eighty thousand conditions of body and mind (give or take a few thousand), so that you have organizations devoted to autism, or to deafness, or to Down syndrome, or to mental health, etc., but no organization or lobbying interest devoted to disability as such. Janet once suggested that people with disabilities and their parents, siblings, guardians, and allies wear a lapel button reading “DC.” Member of the Disability Community. And you know what? If everybody who is actually in the disability community did that, the world would know that we are legion.

In the meantime, I do what I can for my son in the public sphere, given my abilities. Emily Kingsley decided that the best thing she could do for her son Jason (and everyone in the DC), as someone who worked on Sesame Street, was to incorporate disability into Sesame Street’s representations of human diversity. I take my inspiration—and I use the word advisedly—partly from her. I don’t have that kind of access to media, but I have access to the worlds of academe and publishing, so I do what I can when I can.

MB: My favorite parts of the book are SO funny (I still chuckle about the official pudding!) and I loved reading about Jamie’s adventures. What new adventures does Jamie have coming up?

Bérubé: Right now, we are embarking on a very adventurous new adventure. Along with three other families in State College, we are buying a house in which our adult children can live with supervision—some permanently, some for a month at a time. We have to form a limited liability corporation. We have to hunt around for a bank that will give us a mortgage we can afford. We have to find out if our kids-who-are-no-longer-kids can live together amicably. It is kind of terrifying—and kind of thrilling.

As for the funny parts of the book: thank you! I think it is important that some of the silliest episodes and observations are all Jamie’s doing. He has such a keen eye for the absurd: official stuff like official pudding, funny name in every state. All I have to do, when he notices that Casillero del Diablo is the official wine of the New Jersey Devils and invites me to marvel at this aspect of the world we live in, is to serve as his scribe.